The search for a final sense of meaning in end of life discoursesucrel.lancs.ac.uk/melc/workshop_may2014/MELC_workshop_May2014... · The search for a final sense of meaning in end

University Hospital Bonn Malteser Hospital Bonn/Rhein-Sieg

The search for a final sense of meaning in end of life discourses


Sokrates (496 – 399 BC)


Dylan Thomas (1914 – 1953)


Attitudes towards Death and Dying Influence of language and culture

Antonovsky: Sense of coherence Comprehensibility, manageability, and meaningfulness

Frankl: Logotherapy Those who have a ‚why‘ to live, can bear with almost any ‚how‘

Walden: SEiQOL Schedule for the Evaluation of the individual Quality of life

Fegg: SMiLE Schedule for Meaning in Life Evaluation

Selman: Spiritual well-being ‚Are you at peace with yourself‘



Cultural Differences Influence of language


Terminology UK: End-of-life care

Liverpool Care Pathway for the Dying: Last days of life (48-72 hours) è Transfer of the hospice model to non-specialist setting

End of Life Care Strategy: Prognosis is measured in months or possibly a year or two è Palliative care is for cancer patients


Cultural Differences Influence of language

Symptom assessment What is fatigue, drowsiness, tiredness?

Who is in more severe pain?

The case of transdermal opioids in Germany Consolation = „Trostpflaster“

Taubert M: ‚Je ne veux pas crèver‘ EJPC 2007, 14:78-9


Attitudes towards Death and Dying Influence of language and culture

Taubert M: ‚Je ne veux pas crèver‘ EJPC 2007, 14:78-9 French: crever German: verrecken, verenden Italian: crepare English: die, perish, peg out, kick the bucket

Stiff upper lip?

Mediterannean syndrome?


The Case of Transdermal Opioids Germany


Painfulness for Cabuntogueños (Philipines) Kohnen N. On Painfulness 2003

Rank Disease 1 Tuberculosis 2 Kidney stone 3 Stroke 4 Leprosy 5 Bone fracture … 33 Blindness … 38 Slowly going blind … 41 Eye infection 44 Deafness 45 Ear infection


Painfulness for Medical Staff (Germany) Rank First year Third year Physicians

1 Myocardial infarction Myocardial infarction Myocardial infarction 2 Stroke Burn wound Kidney stone 3 Bone fracture Kidney stone Burn wound 4 Burn wound Toothache Toothache 5 Going blind Bone fracture Bone fracture 6 Rheuma Ear infection Rheuma 7 Addiction Dog bite Headache 8 Toothache Rheuma Ear infection 9 Blindness Headache Stomachache

10 Kidney stone Tuberculosis Eye infection 11 Dog bite Stroke Neckache 12 Deafness Stomachache Dog bite 13 Tuberculosis Addiction Cut wound 14 Ear infection Cut wound Addiction 15 Headache Eye infection Going blind 16 Eye infection Going blind Blindness 17 Stomachache Neckache Tuberculosis 18 Imbecility Blindness Deafness 19 Struma Imbecility Flu 20 Cut wound Deafness Stroke 21 Flu Flu Diarrhea 22 Neckache Struma Imbecility


Unbearable Suffering Ruijs et al. BMC Palliative Care 8 (2009)

Development of SOS-V (State of Suffering), 69 items

5 Domains: medical signs and symptoms 37 items loss of function 7 ítems personal aspects 17 items aspects of environment 6 items nature and prognosis of the disease 2 items

Good content validity, feasible in practice


Cultural Differences Belgium

Bruxelles area, 552 French & 149 Dutch speaking physicians

French-speaking Dutch-speaking

Euthanasia 0.7 2.7

Palliative sedation 15.8 9.3

Palliative sedation 2.4 0.7 with life shortening intended

Chambaere et al. J Pain Sym Manag 39 (2010) e5-7



Request for Euthanasia Germany

Patients are involved in an active process of constructing the course of disease.

They try to balance life time and anticipated agony è perception of time is distressing.

Dying process is anticipated as terrible and scary è conflict with available schemes of a rapid and painless dying.

Anticipated pictures (agony and dying process) are highly available è patients experience them as intrusive.

Coping strategies are focused on avoidance.

Pestinger et al. (in preparation)


Journal or Irreproducible Results www.jir.com


Documents

The search for a final sense of meaning in end of life discoursesucrel.lancs.ac.uk/melc/workshop_may2014/MELC_workshop_May2014... · The search for a final sense of meaning in end